5 - Young Children with Disabilities in Canada – An Overview ⁶⁷

child reaching and laughing

Children with disabilities represent an important segment of the young Canadian population. An understanding of who these children are would help to ensure that they receive the support necessary to reach their potential. However, relatively little is known about the health and development of young children with disabilities. This can be partially attributed to the difficulties associated with defining “disability.” The Health and Activity Limitation Survey (HALS) for Children (1991) identified children with disabilities based upon the presence of chronic conditions;⁶⁸ use of technical aids (such as crutches, hearing aids or braces – excluding braces for teeth); long-term health problems that prevent or limit many activities considered typical for a child that age (such as participation in school, at play or in any other activity); enrolment in special education schools, in special classes or an individualized program; difficulty seeing, hearing or speaking; long-term emotional, psychological, nervous or mental health problems; or any other long-term health problem lasting six months or more.⁶⁹ This chapter outlines what is known about the circumstances of young children with disabilities using the most recent data available. It also identifies gaps in the information needed to provide a better understanding of these children.

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Potential Data Sources for Information on Children with Disabilities

The 1991 Health and Activities Limitation Survey (HALS) is the primary source of information for children with disabilities. This survey provides basic demographic information such as age and gender as well as information on the nature and severity of the disability and barriers encountered in aspects of daily activities.

In 2001, HALS was replaced with the Participation and Activity Limitation Survey, which will provide information on disability type and severity for persons with disabilities, including young children. It will also provide information on a variety of areas including education, recreation and parents’ labour force participation. Also important will be data on disability-related expenditures, how families fund such expenditures, and what supports and services are required (as well as the unmet need for supports and services). Data are expected to be released beginning in 2003.

The National Longitudinal Survey on Children and Youth (NLSCY), which is the key source for much of the data presented in this report, only provides limited information on children with disabilities as the sample size is small. Over time, the NLSCY might be particularly useful in helping understand more about detecting disability in children of various ages and the factors that are important in determining the outcomes for these children. The longitudinal nature of this survey can permit an examination of a variety of trajectories followed by children with disabilities. It can also be instrumental in future tracking of young children into adulthood to determine the link between some early chronic conditions and the development of activity limitations (and what variables might intervene in this process).

Young children have a low rate of disability

The rate of disability among young children in Canada is lower than it is among adults. This is partly because some disabilities in children have not yet been detected and also because the majority of disabilities are acquired after childhood. In 1986, 3.4% of Canadian children from birth to 4 years of age had a disability; by 1991, however, this had risen to 4.5% (5% for boys and 4% for girls)⁷⁰ representing 85,070 children,^{71, 72} The reasons behind this increase are not well understood. It might be a result, in part, of a true increase in the incidence of certain types of disabilities or chronic illnesses; however, it might also be a result of earlier diagnosis and recognition of certain problems.

Most disabilities in young children are mild

The vast majority of disabilities among children are considered “mild” in nature.⁷³ According to the 1991 HALS, 89% of all children from birth to 4 years of age with disabilities had a mild disability (representing 75,710 preschoolers with disabilities).⁷⁴ It is estimated that less than 1% of all children with disabilities live in institutions. ⁷⁵

Among very young children, chronic conditions are the most prevalent type of disability. In 1986, 90.6% of children from birth to 4 years of age with a disability had some form of chronic health problem, as opposed to a disability based primarily on activity limitation; the single largest group was those affected by heart disease - 15.4% of young children with disabilities.

One in five young children with disabilities lives in a lone-parent family

A fairly high proportion of children with disabilities live in lone-parent families; among children from birth to 5 years of age with an activity limitation, 20.5% lived in lone-parent families in 1994. ⁷⁷

Less than half of pre-schoolers with disabilities in two-parent families have both parents in the paid labour force

Among young children with disabilities in two-parent families, 47.2% had both parents in the labour force, ⁷⁸a significantly lower percentage than for children without disabilities.

Almost one quarter of children with disabilities live in low-income families

Data from the NLSCY (1998-1999) indicate that 24.8% of children from birth to 5 years of age with special needs (including children with chronic conditions and/or activity limitations) lived in families with incomes below the low-income cut-off (using pre-tax LICO). ⁷⁹

Balancing work, family and child care can lead to high levels of parental stress among parents of children with disabilities

Children with disabilities may rely on parents to take on multiple roles of therapist, teacher, playmate and advocate, in addition to providing physical care.⁸⁰ Survey research suggests that 93% of families with children with special needs ⁸¹ reported feeling moderate to high levels of tension as a result of balancing work, family and child care responsibilities. ⁸²

Highlights

This chapter provides a brief sketch of young children with disabilities living in Canada:

In 1991, there were some 85,070 children from birth to age 4 with a disability in Canada, representing 4.5% of young Canadian children.
9 in 10 young children with disabilities had a “mild” disability.
Among young children with disabilities, heart disease is the most prevalent underlying condition (15.4% of young children with disabilities).
In 1994, 20.5% of young children with disabilities lived in lone-parent families.
Less than half of young children with disabilities had both parents in the labour force.
In 1998, 24.8% of young children with disabilities lived in families with incomes below the low-income cut-off (using pre-tax LICO).

67. Acknowledgement for the development of this chapter is extended to Kate Rexe, Gail Fawcett and Paul Roberts of the Canadian Council on Social Development.

68. Chronic conditions include lung conditions or diseases other than allergies, asthma or bronchitis; heart disease or kidney conditions or diseases; cancer; diabetes; epilepsy; cerebral palsy; spina bifida; cystic fibrosis; muscular dystrophy; paralysis; arthritis or rheumatism; behavioural or emotional conditions; mental handicaps; learning disabilities; missing or malformed limbs; high blood pressure and others.

69. Oderkirk, J. (Winter 1993) “Disabilities Among Children” in Canadian Social Trends. No. 31. Ottawa: Statistics Canada.

70. Ibid.

71. Canadian Institute of Child Health (1994) The Health of Canada’s Children: A CICH Profile – 2nd Edition. Ottawa: Candian Institute of Child Health.

72. Census data from 1986, 1991 and 1996 for all Canadian children under 15 indicate a slow, but steady, increase in the disability rate over time for this population.

73. Severity of disability in children is based upon the number of limitations or chronic conditions reported. When only one or two limitations or chronic conditions are reported, the disability is considered mild.

74. Oderkirk, J. (Winter 1993) “Disabilities Among Children” in Canadian Social Trends. No. 31. Ottawa: Statistics Canada.

75. Ibid.

76. Avard, D. (1994) Children and Youth with Disabilities in Canada: The 1986 Health and Activity Limitation Survey. Ottawa: Canadian Institute of Child Health.

77. NLSCY (1994) (Public-use Microdata file).

78. NLSCY (1996) (Public-use Microdata file).

79. National Longitudinal Survey of Children and Youth, Cycle 3 (1998-1999).

80. Voices for Children Home Page, 2002. http://www/voicesforchildren.ca (September 6, 2002).

81. Special needs refers to “disabilities, delays or health disorders that significantly increase the difficulty of obtaining and keeping adequate child care and/or child care-related services.” (According to S. Irwin and D. Lero in their book In Our Way: Child Care Barriers to Full Workforce Participation Experienced by Parents of Chidlren with Special Needs – and Potential Remedies. pp. vi.)

82. Canadian Institute of Child Health (2000) The Health of Canada’s Children: A CICH Profile - Third Edition. Ottawa: Canadian Institute of Child Health.